I wish we could be "normal"

[elliejjtiny]

Not sure if this is the right place, or if the title is right. DS4 has had 8 general anaesthetics. He was 2 last month. 2 of them were long (3 hours plus) major surgery, others were more minor. Sometimes when people post on facebook about their child having their tonsils out etc and they don't understand why they have to hang around waiting or the pros and cons of cannula v gas anaesthetic). It makes me realise it's not normal to be on first name terms with the anaesthetists or for the play therapists to know which app on the ipad is your child's favourite to distract them from the anaesthetic mask. Sometimes I wish I could breathe a sigh of relief after an operation and think thank goodness that's over like normal people. But every time we leave the hospital I know we'll be back soon. I don't know anyone else who has to do this and sometimes I think I'm the only one.

My kids have had surgery but I live in hospitals. We go at least once a month. No one gets it. It is now the "normal" for us.

My son never asks why he's always at hospital and I was told by a mum who's son is now 26 that he can't remember his problems from his childhood as they weren't problems for him. That was his normal too.

I think you find a new normal in the end. It's your normal life. Yes it sucks at times but each trip for me gets less stressful.

I don't think I could cope as well with ga and ops thou

Oops sorry I mean never had operations. The blood test with two hours of screaming was bad enough!

No one ever gets it. It's a very personal and lonely place having a complex kid

Thankyou. DS4 is the only one who has lots of operations but DS's 2, 3 and 5 have hypermobility so see orthotics, eye drs, paediatrician etc every 3 months or so, usually at different times to make it more complicated. DS4 sees audiology, ENT, paediatrician and eye dr. DS1 is being assessed for AS at the moment and he was so excited that he finally had his own appointment at the hospital.

Most of the time it's ok, it's just those times when "normal" people get a glimpse of what it's like for me, day in day out and then they moan about it. Or when people get jealous because we get disability tax credits, sensory stuff from the family fund or when I got a side room on the maternity ward because DS5 nearly died when he was born. But that's a whole other thread.

Yes I know. We got annual carers passes for legoland at the weekend. I did feel that I shouldn't be pleased as it's the reason we need it. A lifetime of complex needs times two

poltergoose one day we will.

2boys last time I went to legoland I carried DS2 all round the obstacle course thing as he couldn't do it himself but wanted to go on it. I felt like I'd earned my free carers ticket then